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Want to come along with me on a trip to the river of denial?

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Posted 7/1/2008 3:16 PM (GMT 0)
I have lived with a very mild case of Crohns for almost 33 years.  Can honestly say that I have not had more than 3-4 flares in all that time.  I have had a few bad days or a bad week, but I personally don't consider those flares, just occasional bumps in the road due to bad diet or stress.

But I think something is going on.  I have not been feeling 100% lately.  Not terrible that I can't work or live life, but just those little niggling problems that are starting to add up.  When I have a bad day or week it usually consists of nausea, loss of appetite, lethargy and sometimes a little D (nothing major).  I kind of think of these as Gastritis type moments, not actual Crohns moments.

But for the past few weeks I have noticed that I have more yuck moments during the day, but I did just have one of the bad weeks recently (look at me make excuses).  The past few days though I have been having more D with spasms and cramps, especially after I eat anything, even my safe foods.  And have been having to use the antispasmotics daily for the past few days.  I usually have problems with the Big C, and taking the pain meds and antispasmotics are usually signs that I will have problems with the Big C again, but I'm not.  I have always had disease in the TI/Cecum area, until my resections removed those areas.  I am having more D now, with alot of spasms rectally along with cramps.  I am not going 20 times a day, but at least 5-6 times.  I even got woke up in the middle of the night lastnight to go and ended up taking another antispasmotic to relax the spasms.  I have not had these spasms and D problems in I can't even remember.

I keep hoping each day things will get better.  I want to keep only taking my Asacol to keep things undercontrol.  I keep hoping this is one of those bad spells because I did have some extreme stress this past month.  I don't want to call my GI because then there will be the tests, medication adjustments, and ............................., I just don't want to be sick anymore.

Just when you think your getting on the right track, this d*^n disease says "Hello, remember me?"  I don't know that I expect any answers from you all, guess I am just venting.  Did I ever tell you I hate Crohns Disease?!!

 

Posted 7/1/2008 3:42 PM (GMT 0)
Oh Nanners, I know how you feel. I even was in such denial that I tried to get my doc to let me stop taking entocort. When he told me no, I lowered the dose and got real sick real quick! I would say since you are writing this post you may need a little boost to get you out of this flare you are having. you must be feeling bad to wonder if you need more meds. let's face it if a person without CD went 5 to 6 times a day they would consider themselves sick. I never went 30 times a day either but when I did it was more like you 5-8 times I would guess. (I never count) The Dr may not change your meds, he may just add something to help you out. Don't make yourself suffer you could be letting this cause damage too. That is how I look at my meds. they help me stop as much damage as I can.... Take care.... and Call your Doctor... we need you to keep yourself as well as possible! ((((hugs))) Karen
Posted 7/1/2008 3:44 PM (GMT 0)
I gave in and called my GI's office and of course he is on vacation until July 14th. But I will still go in and see my family doc today and get started on the lovely steroids. I know I need them, just hate taking them.
Posted 7/1/2008 4:20 PM (GMT 0)
Nanners I see that all you are just on asacol. Perhaps you need to try 6Mp or Imuran. It could make a big difference.
Posted 7/1/2008 4:49 PM (GMT 0)
I think that being in denial at times is normal, almost a fine line between knowing that you're getting sicker and not wanting it to happen so you try and convince yourself that it's not happening (kinda like mind over matter) if you don't admit you're getting worse then hopefully it will stop and turn well again...don't beat yourself up over it, no one in their right mind wants to be sick and it's a constant battle living with this DD day in and day out, yr after yr.

:)
Posted 7/1/2008 4:59 PM (GMT 0)
I am glad you are going to see your family Doc. Take care of yourself! Karen
Posted 7/1/2008 5:13 PM (GMT 0)
Nanners
I am on Morphine and percocets for B/.T pain for the sores and other issues
100 mgs of morphine twice daily............

I am on the toilet without fail every morning ........
(even after watching very diligently what I eat)
With D up to 6 7 times ..........IF a/p is acting up .......more.......

My doc can not believe it
'For my size ( about 115 lbs) with all the opiates I am still like this daily
'
I am sheduled for more tests as well to see what is going on with my guts .........

I am so glad you got an appointment hun
and plz let us know how you make out
n I will do the same

Take care you .....I care
Luvs
LYN
Posted 7/1/2008 5:14 PM (GMT 0)
I know exactly how you feel...I'm tapering off prednisone at 5mgs now and can feel the discomfort coming back (too early for 6mp to kick in ...) I also have a 'mild' form of the disease but it's proven to come back time and time again (with the first sign often being an obstruction) despite my best attempts to comvince myself that I beat it through by following the 'right' diet...
Posted 7/1/2008 5:50 PM (GMT 0)
Thanks everyone for your kind thoughts. I am going to try to see if maybe a quick burst of Pred (10 day course) will get me back into remission. I really don't want to do the 6mp/Imuran because of such bad side effects those drugs gave me lasttime I tried them. I have always been able to do the steroid/5-asa meds to get my disease back in control. Hopefully, that will work again. Keep your fingers crossed, I have been fighting any stronger meds for years because I have been able to keep things under control with just the lighter drugs.

I am kinda worried that the disease has moved though. I have never had the rectal spasms like I am having now. I last went to the BR about 30 min ago and its still irritated. At least I don't remember if I had them before or not. HA! Like I said I have only had a few flares over my years with this DD. And quite frankly I haven't had these types of symptoms since the early days, so I could very well have had them, but time kindly removes some memories I think.
Posted 7/2/2008 3:37 PM (GMT 0)
Well I saw my PCP but this time he wasn't much help. He didn't want to give me Pred because there is a note in the computer from GI that the Pred causes me severe hypertension. Which it does, but only on really high doses. And he wouldn't prescribe Entocort because he wasn't familiar with the med. So I am playing doctor myself now and have started a 10 day schedule of Pred. Luckily I still had Pred left from last years attacks. I will start with 25 mg for 2 days, 20 mg for 2 days, 15 mg. for 2 days, 10 mg for 2 days and 5 mg for 2 days and if needed another 2.5 mg for 2 days. Hopefully this will quiet things down for me. I am hoping I am catching it early. My GI returns on the 14th so if not feeling better by then will talk to him about whats best to try next. I can't just sit and wait for my GI to come back to get treatment. Took my first 25 mg this morning, keep your fingers crossed for me. Hopefully within the next couples days I will feel some relief.
Posted 7/2/2008 3:53 PM (GMT 0)
Nanners
I am hoping those pred will still be okay to take
if they are from a yr ago

I wish you well my friend and so sorry you are having to deal with this again.......
.
God BLess

LYN
Posted 7/2/2008 6:29 PM (GMT 0)
too bad the Primary Doc could not help. Entocort does take longer to work anyway. I hope the Pred will help you some. Good luck!
Posted 7/2/2008 7:21 PM (GMT 0)
Nanners, you poor thing. It's so unfair that we have to get sick, but I guess we all know that Huh!

You starting yourself on pred is pretty much the sort of thing I would've done... But keep an eye on your B/P. Even if
you have to go to Walgreens every 8 hours or so LOL.

I'll be thinking of you, as you do for me... That makes you special.
Posted 7/2/2008 7:22 PM (GMT 0)

Nanners, were we split at birth or something?  That is exactly what I would do.  I can't tell you how many times I have just done the taper myself because the GP has told me I know as much about prednisone as he does and just to keep him informed.  I hope you are feeling better soon and that the quick taper is just what the "doctor" ordered.  I'm actually doing the same now, but for my joints.

I hope you have a quiet peaceful fourth and are feeling better long before your doctor comes back from vaca!

Posted 7/2/2008 9:56 PM (GMT 0)
*Hugs* This disease certainly does suck... I wish none of us had it...
Posted 7/2/2008 11:52 PM (GMT 0)
Nanners I hope you get back to feeling good soon. Have you got a home blood pressue checker. Darn girl don't give up and get yourself to your GI if you get worse when he returns. Let's hope it's just a wee reminder that you"ll give the old boot to. We are all here for you as you know. lol gail
Posted 7/3/2008 12:03 AM (GMT 0)
Just keep your head up. I have been on and off of prednisone for the past two years. I am no longer working and am just taking it one day at a time. Two years ago I would have NEVER thought that at age 26 I would have had multiple accidents, uncontrollable bloody bowel movements, etc etc

I went through a period where I felt really depressed and down, and I do have days where I just want to give up BUT I push through, because it is what it is and unfortunately we're just along for the ride. My faith has gotten much stronger and I just try and stay positive. I have pretty severe Crohn's and my attitude, family, athletics, and faith are what gets me through.
Posted 7/3/2008 2:00 AM (GMT 0)
Hang on Nanners! Sorry I didn't send good wishes earlier.

Lately, I keep reminding myself of the definition of chronic---always around. Today was the first day I felt like a normal person in over 4 months--I think it was an anomaly. Out of the blue--I could take a walk and I ate clam strips (yes, I am starting to regret this as i type). Monday was awful, awful. And last Friday--I just wanted to crawl in a hole. I was out shopping and thought I was going to pass out. not really sure how I drove home. Got home, chugged powerade, got into bed. We had concert tix and plans for dinner to celebrate our anniversary--made myself rally but was so difficult and husband was rather disappointed. Darn migraine pumped up in the middle of the concert. Cramping and pooing at the end of the concert. Life does go on.

If it makes you feel better, I can't remember the last time I slept through the night. I get into bed only to get right back out again to poo. I start to fall asleep and wake up running to the toilet. (This can be rather funny if I've taken a sleeping aid.) I get back to sleep and wake up with the birds--well, at least I can listen to something nice at 4:30am while I pooing my brains out.

Sending good vibes your way. You are not alone!!!
Posted 7/3/2008 4:36 AM (GMT 0)
Nanners- I didn't have time to read everyone's response here but I do have two cents worth to add.

How long ago was it when you had your knee surgery? I assume they initially had you on some antibiotics either during or after surgery, right? The reason I'm bringing this to light is that according to my GI, the antibiotics could cause a flare up to 10 flippin weeks after you've taken them. Hopefully it's nothing more than that. Keep everyone posted and I will followup with you when I come back from vacation...unless I have a Fibro moment and forget I even posted this!:)
Posted 7/3/2008 4:26 PM (GMT 0)
Haha Broom don't feel bad I have the fibro fog too. Will be telling a story and half way thru I forget what I was talking about.

I did start the 10 day Pred dose yesterday and am feeling a little better. I have been on vacation the past two days and I am sure thats helping too. Only gone twice today and no spasms so I am hopeful. As far as the antibiotics for the surgery they only gave me a dose right before the surgery via IV and I take Probiotics daily so I think I am okay there. So the news so far is, feeling better. Will let you know how its going when I get down to the lower doses, thats when it will show if I need something more. I am hopeful tho that this little Pred dose and some rest will get me back to my normal. Thanks for all your kind thoughts.
Posted 7/5/2008 4:32 PM (GMT 0)
{{{NANNERS}}}

BIG HUGS AND POSITIVE THOUGHTS - COMING YOUR WAY! Hang in there sweetie. I hope the pred helps. Denial - I familiar tune for me... until pain, nausea and poooooo becomes too much to deny. Then it's bloody hell, here we go again! CD is such a less-than-wonderful roller coster.

Keeping you in my thoughts.

-Leslie a/k/a Texan
Posted 7/5/2008 11:21 PM (GMT 0)
Hi Nanners any changes yet? lol gail
Posted 7/6/2008 5:09 PM (GMT 0)
Thanks for asking Gail. Yes I am doing very well actually. No more cramps, D or rectal spasms. I am down to my first day at 15 mg. Sooooo......so far so good. I will continue to watch myself closely the lower I go down. My last day on Pred will be this coming Thursday, so I'll keep you all posted on how I am doing then.

Yes Zanne, I do believe you and I are IBD twins. We both seem to live with very similar Crohns. Adhesions, obstructions, life on low residue diet, gastritis etc.

After having this disease so long I think sometimes I know how to treat myself better than some of these docs. Hopefully this is all I needed. I think catching it early is the key.

Thanks again all for your kind thoughts.
Posted 7/6/2008 5:11 PM (GMT 0)
Oh I can say that the Pred upsets my gut a little, but I think it could be worse if I wasn't already on Prilosec. But this little upset is nothing compared to how I was feeling and nausea meds help with it.
Posted 7/6/2008 6:32 PM (GMT 0)
Hi Nanners glad you checked in with us because I was wandering about you, good your feeling so much better and your right it is hard on the tummy . Hoping your weaning continues to go good. Will be keeping a eye on you. Sending good wishes your way. lol gail
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